HELP!!! My Dad & His Cholostomy are Driving Me Nuts!!!

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DTMEDIC
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/16/2008 11:35 AM (GMT -7)   
I am SO sorry to be venting here...but my elderly father, who has had a colostomy for about 10 years now is living with me and seems to always have some problem or another with his cholostomy.  For the past 3 weeks he has had what I KNOW is a peristomal yeast infection, yet he has been refusing to see a doctor...and no one is going to prescribe something without seeing it first hand.  Today, we had a huge row, and I finally convinced him to go after making a complete idiot of myself yelling and telling him to just manage his own stinking problems from now on and quit telling me about them if he isn't going to get help.  I just got SO tired of trying to be kind and understanding and sympathetic.
 
He acts like the colostomy was worse than a death sentence...and while I am completely sure I have NO clue how difficult someone's life must be living with this problem...I also know that people LIVE their lives.  He won't eat anything but cheese and crackers, pecan twirls, spaghetti, pizza, hamburgers and hot dogs.  It's like living with a 2 year old...everytime I suggest something, he says it will mess with his ostomy...so, me and my family are sick to death of eating the 4 different foods made with red meat and I'll be darned if I'm fixing two different meals just for him.
 
The other thing that is driving me crazy is his CONSTANT shaking, picking, wiggling...you name it...of the colosotomy pouch. I'm not joking or exaggerating when I say it is constant.  Every 5-10 minutes...truly, and sometimes its almost a violent shaking of the bag.  He says this is necessary to get the poop to fall into the bag or else it just collects around the stoma.  I think its just a bad habit he has gotten into.  I'm sure that might be necessary SOMETIMES, but do all/any of you have to be constantly picking, shaking and messing with your colostomy?  If so, I'll just shut up...but to me and my family its tantamount to someone picking their butt all the time.  Believe me, it is no secret to ANYONE that he has a colostomy...he's always messing with it.
 
He takes 8 Imodium AD pills a day because he says that if the stools are soft they won't fall into the bag.  That just seems counterintuitive to me...I would think that you want them a LITTLE bit softer and less sticky, but I don't KNOW because I haven't been there.  Please help me...offer suggestions that I might be able to give to him from folks who actually know what they're talking about
 
Despite 18 years of medical experience as a Paramedic...and constantly trying to find out more about his condition, he thinks I don't know anything about colostomies.  Am I being a horrible daughter???   Any thoughts or suggestions are gladly welcome.

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 7/16/2008 1:55 PM (GMT -7)   
Well, first off, you have come to the correct place. And someone with far more experience than I can share, will respond to you. So please hang in there.

I only had a temporary colostomy but it did turn my world upside down (I had Rectal Cancer, Stage 1). My Ostomy nurse told me that men have a more difficult time dealing with colostomies than women do. I am not sure if members here would agree with this opinion or not, but this is what I was specifically told. I recall looking at my colostomy bag and thinking, okay I've had extremely heavy periods and changed hundreds of messy diapers (I'm a mother, of two daughters who are now 18 and 21). So I just looked at the colostomy as another thing I'd have to figure out. And I did. Right away. Perhaps your dad has had a different experience. Does he have an ostomy nurse (also called an ET Nurse)? Perhaps you could call her and ask for advice. It does sound as if you both need to take a deep breath and make the best of this situation. Compounding the situation is your relationship. If you were a caregiver to an elderly gentleman you would probably have different expectations of him. And vice versa. He sees you in one role - his caregiving, paramedic daughter who, in his opinion, is supposed to know how to care for him. While you see him in another role. I would also gently suggest you talk to his doctor, or a support group in your area. You could also approach this situation as if it's the first day you're caring for him. In another words, just starting over. Ignore all of the things that annoy you, keep them to yourself and see if that approach might help.

I'm really hoping someone responds soon to your post. It just tugged at my heart! Hang in there....

Mary/Marsky

simmadown
Regular Member


Date Joined Jul 2008
Total Posts : 26
   Posted 7/16/2008 4:46 PM (GMT -7)   
Oh gord, it sounds like my brother in law. Everything is always way more awful, important, devastating, etc. to him than to others who've gone through the same thing. He too acts like a two year old. It's an attention-getting thing, imo.

Personally, I think he shouldn't be waggling his bag in front of people. It's still a private thing and he could take himself into the other room if he needs to manipulate something.

A colostomy is not the end of the world. Troublesome at times, to be sure, but definitely not something that should be dwelt upon 24/7.

It's so frustrating for someone to present a problem to you and then not take your advice, i.e., go to the doctor to get a scrip for yeast infection.

I think Marksy hit on something relevant too. It's a whole different dynamic when you're caring for a parent than if you were caring for a 'stranger'. There's probably emotional cwap underlying the immediate problem and then when he's acting like a child, all that comes bubbling up.

I'll take off my faux shrink cap now and shut up. :-)

Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 7/16/2008 8:24 PM (GMT -7)   
DTMEDIC,

All the moving around and touching/shaking the bag is probably from the yeast infection. I have a loop ileostomy and have had a yeast infection myself. They are horrible!, especially under the pouch/flange. Like Mary/Marsky said, it would probably be a good idea to talk to his or a local ET Nurse. If you call your hospital, they can probably hook you up with one. Our ET Nurses are in what they call Wound Centers at the hospital.

No, it is not the end of the world or a death sentence, but being elderly, having to live with his daughter and on top of that, having a colostomy must be pretty difficult for him to handle. Just remember, he wont be around forever, so, enjoy the time you have with him. Also, try to talk to him calmly and tell him in your house you don't want him touching the pouch around the rest of the family.

Good luck. I know easier said than done.

DTMEDIC
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/17/2008 2:04 PM (GMT -7)   
Thank you SO MUCH for your replies. You are not wrong when you say the dynamics/relationship between my Dad and me is totally different than when I'm caring for people as a Paramedic. I'm used to people listening to what I say, and trusting that I am going to do what's best for them. I guess Dad still sees me as his child, so how could I possibly know more than he does about a subject...yet I'm the first one he comes running to when anything is wrong. And...it isn't just the colostomy...its EVERYTHING...finances, his horrible back & debilitating pain...yet if I make a suggestion for a solution...I get a bunch of crap about it.

Dad was not a terribly loving or supportive father during my childhood, and is an "mild" alcoholic (if there is such a thing). There are lots of unresolved issues and resentment on my part. But, I just thought I was grown up enough to let sleeping dogs lie and take care of my father in his old age because that's what good children do...but it seems impossible sometimes, and I wonder which one of us will crack up first!!! :-)

It's funny, after yesterday's blow up, he's tip-toeing around me, when to the doctor today...yep, it was a yeast infection. Maybe he got scared I would kick him out. (My other sister, rather than deal with his issues, made it so miserable for him that he finally left her home; so I'm the second shot). Its great to know that people should not need to mess with their colostomy bags continuously, and it does make sense that it could have been a yeast infection causing it...but he says its to manipulate the contents to the lower part of the bag. He does it without even realizing it...its like a tic or something. I told him about it yesterday and all he did was yell and curse at me that I was lying, that he didn't mess with it and that I didn't know what it was like and that you HAD to do that ...so I figured I'd ask the folks who would know. You're also right in that I need to find a way to enjoy my time with him...somehow.

I keep asking God to forgive me for my uncharitable attitude and lack of patience...I only hope things get better for us. It's been 2 years, and it seems to get worse all the time. Maybe what I really need is a support group for caregivers of adult parents...Hmmm...Anyway, thanks for allowing the rant. Any other suggestions are welcome.

DTMEDIC

Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 7/17/2008 5:33 PM (GMT -7)   
DTMEDIC, I thought of a couple other things today that may be of help. Hollister makes a product called "Adapt" that works really well as a lubricant and deodorant. I use it quite a bit. I have an ileostomy which you have to drain several time each day, but at night it keeps stool away from the stoma. I sure it would work really well for your dad.

Also, maybe he needs a "DISTRACTION". Does he have a hobby?

Take care!

DTMEDIC
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/17/2008 6:34 PM (GMT -7)   
Thanks Ohio43...I will check into that product by Hollister. He hasn't changed what he's been using in over 10 years, so I'm sure there is better stuff out there.

You could not have been more correct in your assumption that he needs a distraction. He has no hobbies and he has no friends (truly...no one that he can hang around with). My husbad and I live very busy lives so he is here alot by himself and all he does is watch television and play computer poker. He does love our little dogs though...so they help some I guess. We have suggested any number of ideas for things he might enjoy...but he says he can't tolerate the back/leg pain enough to do anything (yet he won't let me make an appt with an ortho to get another MRI to see if there is something there that can be fixed).

There is a possibility that he can enter Moosehaven (an independent living facility for Moose members) in Florida (we're in Virginia) once his divorce from my step-mother is final. Even though this is a long way from us...I think it would probably be the best for him. He would be surrounded by people his own age, with similar interests and experiences. Plus, as long as he enters in an independent living state...should he become ill/disabled or need skilled nursing, they would just move him to the skilled nursing facility. Financially, it is the smartest thing to do and I really think for his emotional well-being it would be good too.

I've promised to come to visit twice a year and to bring him home for a month from Thanksgiving to Christmas...plus I'll provide him cell phone, computer/email, etc...whatever it takes to make him feel more connected to us. I'm just hoping he will opt for doing this, but I have my doubts.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5697
   Posted 7/18/2008 6:11 AM (GMT -7)   
I suggest you also visit http://www.aging-parents-and-elder-care.com/ as it seems you have two issues; one is your father's care of his colostomy and the other is acting as a caregiver to your parent. The website above will help you enormously with the caregiver role. They have a terrific discussion board that you might benefit from.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

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